Wednesday, September 29, 2010

Hope for the Best, Prepare for the Worst

It's only been six days since my last post, but an incredible amount of things have happened. As has been my life for the past few months, plans, emotions, symptoms change multiple times a day and I'm working incredibly hard to continue to roll with each of them without ending up totally off kilter.

Wednesday evening I started to feel crummy. Not the normal crummy of chemo fatigue, but a different kind. I could tell that something was brewing. The wind had been taken out of my sails and my joints ached and groaned. These symptoms continued on and off until things really culminated Thursday night when I woke up with shaking, violent chills and a 100.6 temperature. I then woke up several more times throughout the night soaked in my own sweat ... my body pooled in it and my skin clammy to the touch.

The chills and fevers continued the next day as Craig, my mom, sister and I traveled down to Sloan for our education day with the transplant team. As soon as we got there I was freezing, despite wearing a cardigan and pants. While waiting for my pantamedine breathing treatment I just couldn't stop shaking and my teeth wouldn't stop chattering. Between appointments I grabbed a hot chocolate out of the beverage machine in the waiting room hoping that it would help warm me up. No such luck. When we entered the room with the nurse and doctor she remarked at my trembling and gave me a blanket to put around my shoulders. They took my temp and it was rising to the 100 degree mark again. Tylenol helped to cut the fever and to calm my body down but Dr. Sauter was still concerned and ordered some blood cultures and a chest x-ray to check into what was going on.

Despite all of this, the show went on. My sister and mom were taken into their training session where they were taught how to administer the Neupogen shots which she'll be doing at home. Conveniently, my sister is currently living at my parents and even more conveniently, my mom is a nurse much accustomed to giving shots. This saves my sister from having to self-administer. She'll get a shot at 6:45 a.m. every morning for six days, alternating the entry site from the arms to the belly to the legs.

The training session for Craig and me included consenting to research studies, reading over the hard-to-swallow procedure consent form, learning about the new Hickman line catheter I will need to have placed in addition to my port (as demonstrated by the flesh-colored plastic model "Chester Chest"), the 12 meds I'll be taking post-transplant and all of their side effects, the nutrition restrictions I'll be under, the calendar of "events," more about graft vs. host disease. You know, all the fun, serious stuff. As overwhelming and daunting as it all was, the nurse that we worked with had such a great approach. I immediately clicked with and felt at ease with her. She was able to bring in some humor without making light of my situation and I appreciated the funny, sarcastic quips.

Then it was time to meet with Dr. Sauter to once again discuss the details of the stem cell transplant procedures and once again go over the risk factors. He spoke about how he is hopeful of my outcome, especially with the 10 out of 10 HLA factor match that I have with my sister, the fact that I responded so well to the GND, and that I obviously have such a great support system, including a fantastic local oncologist ... all things in my favor. I'm doing my absolute best to focus on these pieces but it's hard not to harp on the other side of the coin, which he had to discuss with me again – the grim odds and his words, which keep echoing in my head: "I don't have to tell you that you've got a bad disease. They call Hodgkin's the 'cureable cancer,' but when it's bad, it's very bad."

To say the least, we were all exhausted after having swallowed so much information. Exhausted, but also more confident on how this will all pan out. We had planned to visit the Matisse exhibit at the Museum of Modern Art but that was just not in the cards after what turned out to be a very long day.

Friday night the fevers were back with a fervor. This time I spiked to 102 degrees and again drenched the sheets and my pillow case, now stained with an imperfect sweaty circle. The chills were awful and Craig spent the entire night with one eye open and a hand over my forehead constantly checking my clammy skin.

After a Saturday morning call to the attending physicians at both Sloan and Hartford it was ordered that I headed to the Emergency Room. It was a beautiful, sunny day, but Craig and I spent the vast majority of it in the Hartford Hospital ER. Blood cultures were retaken. I got another chest x-ray, had to pee in a couple of cups, and had the very back of my nose swabbed with a giant Q-tip. This was all in an attempt to check for growing bacteria or present viruses that might be the cause of the fevers as anytime a fever presents, it means there is some kind of inner battle going on.

Accustomed to these types of trips we thought to bring along the laptop and some DVDs to keep us entertained. Waiting for blood test results and trying to get discharged from the ER are two very drawn out processes. After nearly six hours, the attending ER doc gave me an antibiotic prescription to treat the only thing that was slightly off in all of the test results. My urine had some very, very minor signs of a possible urinary tract infection, though not at the levels that they'd pay any attention to in a "normal person." He spoke to both Dr. Sauter and the person covering for Dr. Dailey and all decided this was the best course. Basically it is grasping at straws, but since then I've been taking Keflex four times a day in hopes to treat whatever this is.

Sunday was a bit better. Monday and Tuesday I again felt in the dumps. I had several conversations with Dr. Sauter yesterday about my symptoms and how to proceed. The fevers are still high, especially at night, and the night sweats are fierce. Sleep has been incredibly broken (for both Craig and me) and my appetite is nil.

I hated to even say the words but I had to be honest and brought up the conversation with Dr. Sauter that this is eerily similar to how the disease presented itself during my last relapse. While we were on our cruise at the end of June, every night I faced shaking, violent chills and though I was intentionally thermometerless, I no doubt had fevers. I told him I was very worried that this was the Hodgkin's already growing back. I feel the same way that I did each other time it has happened.

Obviously this is concerning and after some thought and collaboration, Dr. Sauter called me back and explained that he wanted to get me in for a PET Scan first just to rule out if there is any disease creeping in. So we've bumped things by a day. Now today, instead of checking into outpatient surgery to get my new cathether put in, I'll be heading to nuclear medicine for yet another scan, my seventh. As soon as I am done with the scan I'll give Dr. Sauter a call and he'll let me know the results and whether I'll go ahead with the transplant process tomorrow. We're packed up and ready to go as if we're in for the long haul, but realize that this might not yet be the case.

Dr. Sauter explained again how crucial it is that I am in a good remission before going into the allo transplant ... studies show that those patients that are have a much higher success rate. Basically we're trying to create the absolute most ideal conditions. He said that in the past, the allogeneic transplant used to be like a "Hail Mary pass", a last ditch effort at saving someone, but these days, if the contributing factors are ideal, patients can be, and are, put into long-term remission. Plus, if the Hodgkin's is brewing, we go ahead with the transplant, and it comes back full force despite the higher dose chemo, it is much harder to deal with as a post-allo patient, which comes with its own bag of complications.

So, once again we're waiting on a scan. Three suitcases are waiting at the door for today’s trip with enough to keep us clothed and occupied for many months if needed. All the house and medical paperwork is in order. But the chance does linger that we might be turning back around to start yet another course of salvage chemo treatment. We're preparing for the worst and hoping for the best ... . I'm not really sure which is which. Whatever happens and whatever I need to do I will do it. I'm up for whatever it takes to get me through this. I am scared as hell, but I am nowhere close to giving up.


  1. Let's put the best spin on this: you're well-equipped, taking every needed and necessary precaution with the very best people (both medical and personal support system) to combat this successfully for the very best possible outcome. Stay focused and determined! And know that so many of us out here continue to root you on from afar (including your peeps in PR Land). Thinking of you and sending you strength. -- Lisa :)

  2. Praying for good news tomorrow - with all our love, your GHAC family.

  3. As always we pray for you and keep you in our thoughts--keep up the fight and feel the positive energy being sent your way!! You will feel better soon!!!! xoxo Bev & Blake

  4. Be strong Karin! You are in my prayers.

    Love and Hope,


  5. Karin,

    You are courageous, strong, and determined; you will persevere. Always thinking of all of you, and remaining in our daily prayers. All the best to you in the coming days!!

    Frank and Laura Loyot and family